Getting the Diagnosis: Jen’s Story

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It wasn’t just hot that summer — it was, literally, the hottest summer I could remember. That’s why it didn’t seem TOO weird that James was so very thirsty. It seemed very logical to me! I remember looking at James and thinking that he didn’t look quite right. He seemed a little bit pale, sluggish and distracted. But then I also remembered my pediatrician’s guidelines on when to bring your child to the doctor. Like many first-time parents, when James was an infant I brought him in for every little sniffle. The pediatrician set me aside and said, “If he has a high fever that won’t come down or persists for several days, or if he can’t keep anything down and seems dehydrated, or if he is having trouble breathing, or if he is very lethargic — then bring him in.” Those were her guidelines. And that July (although I was a bit thrown by “lethargic”), I wasn’t sure he really qualified.

But then things started getting really “inconvenient.” Soon, it wasn’t JUST the constant drinking and frequent daytime potty incidents — the NIGHTS became horrendous. It was during a midnight sheet change that I noticed something peculiar about James’ room. His urine smelled sweet. It was two o’clock in the morning and I googled “sweet urine.” Every single reference pointed to diabetes!

The very next day I called the pediatrician for an appointment and secured one — the last appointment of the day. When I finally saw the nurse, I indicated that I thought that James might have diabetes. She decided to do a blood sugar reading. This young nurse poked his finger and put the blood onto the large test strip. When the results flashed, her face turned white and she left without a word. Moments later the doctor appeared and told us in no uncertain terms that James had diabetes and that his blood sugar was so high (unreadable to the meter) that he needed to go immediately to the ER.

It took us an hour in rush hour traffic to reach the emergency room. Luckily, the ER had been informed of our impending arrival and took us immediately back to a “room” where we tried (and failed!) to get comfortable. They kept us in the emergency room all night and I can scarcely imagine a more inappropriate setting for a young and very sick child and his very worried family!

A new day brought much improvement. We were awakened in our corner of the ER by some wonderful pediatric nurses who summarily moved us to a private room in pediatrics. Quiet, windows and doors, privacy, television, a comfortable bed — all were improvements to our mood! James seemed to be feeling better and the biggest change in that day was the improvement of our level of information!

It is hard to think now about how ignorant I was — we all were — about diabetes back then. My first thought upon James’ diagnosis was that I caused his diabetes by feeding him too much sugar. I thought he could never have cake again. I wondered if he was “insulin dependent” or not and what that meant. I really had no clue! Several fabulous doctors and one rather remarkable diabetes educator were pivotal to our diabetes education.

Our diabetes educator was introduced to us that first full day at the hospital and we would come to know her well. The first words out of her mouth were, “He will live a long and normal life.” And that was the very best thing in the world to hear! In a way we were fortunate that we took a trip directly from the pediatrician’s office to the ER with little time to google the results of a diabetes diagnosis. Instead, my first impressions came from this wonderful woman who shared stories of people living into their 80s with the disease despite diagnosis during time periods with only nominal treatment options. She told us of athletes and intellectuals and normal kids who just happened to have diabetes. If I have one person to thank for the outlook that I now have regarding diabetes, it is this woman!

James stayed in the pediatric ward for five days. James’ blood chemistry needed a few days and many interventions to straighten out completely and we, as parents, had a LOT to learn. The nurses were fabulous, the doctors understanding, and the educators were superb. James enjoyed the attention from concerned friends and family, the ability to watch more than 30 minutes of television a day and the “toy room” in the peds ward that was well stocked with trains and Little Tikes® cars. Each evening, I had the opportunity to hold my sweet James in his hospital bed. Daddy couldn’t be there every night, as he was at the end of a challenging semester at school, but he did join us one evening. He was awakened by a phone call from his twin wishing him a happy 30th birthday. How many can say they ushered in their 30th birthday on the floor of the peds ward?

All in all, our days at the hospital, aside from our difficult first night, were oddly special. We left the hospital full of information and hope and the love of so many people—professionals and acquaintances. While our life had forever changed and while we KNEW it was going to be a hard road, we were full of determination to make this a positive experience. My heartstrings tugged a bit as James sobbed in the back seat of the car upon leaving the hospital. When I asked him what’s wrong, he said simply, “I miss the hospital and I want to go back!” All in all, he said it best. Diabetes wasn’t going away, but at least our first experience with it was sweet!

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.